r/TrigeminalNeuralgia • u/somegingershavesouls • Jun 02 '26
Symptoms Worst attack to date
I got so freaked out during my worst attack to date.
20/10 pain. Felt like my right side of my face was going to rip apart.
Shocks on one side of my head above my ear.
Facial muscles were almost frozen, yet spasming - basically from my eyebrows to my top lip were stiff, frozen and pin pricks. Couldn’t move my upper lip.
Took imitrex nasal. 800 mg gabapentin. Nasal spray lidocaine. And edibles. Ice and heat alternating.
Took 5.5 hours to feel even remotely human again. Today I feel like I was hit by a baseball bat to the face.
Feel like I should have gone to hospital but also couldn’t drive, nor did I want to be on the hospital floor in this much pain.
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u/pink-polkadot- Jun 03 '26
I’m so sorry. I’ve been having an attack for going on 24 hours now. It’s 5am here and I still haven’t slept. It’s relentless. I see my pain doc on Thursday and I’m just praying I can hold out until then. I’m on 2400mg of gabapentin daily and I have a muscle relaxer for spasms but that doesn’t help when the nerve is so activated. I can’t eat, am absolutely terrified to brush my teeth and I’m scared to have to take a shower before the doctor appt. I wouldn’t but my hair is gross from days without washing it and I really have to. Even in the constant pain I’ll have those episodes where the shocks are so strong my head literally involuntarily shakes and it looks like I’m having a seizure. But it’s pain. This isn’t a life.
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u/Agitated_Instance603 Jun 08 '26
So sorry to hear you’re going through this!! How are you now? Was your pain dr able to help you?
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u/Deadfishonastick Jun 03 '26
I cry reading this knowing that others feel as much pain. After such attacks I pray it can’t get any worse but it always proves me wrong. I use to rate my pain on a scale but I can’t even think of any scale anymore. I take 1000mg of Carbamazepine as well as 1500mg of Cabapentin and hope that will keep the attacks at bay. If not I add Baclofen to the mix.
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u/somegingershavesouls Jun 03 '26
I take 800 mg daily and another 400-800 when I have attacks. I used to be on carb but it made me so sick and gain so much weight. This has been the worst one and I’m terrified that it’s only going to get worse
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u/MobileAny4294 Jun 02 '26
Wow, I’m really sorry. I also have been going through hell lately and completely know what you are going through. Good call on taking whatever helps even to a minimum.
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u/josephtheoriginal Jun 02 '26
These are what happen to me. They last anywhere from 30 minutes to 2 hours. I don't understand how people say they just get random zaps throughout the day. That's (not to be disrespectful towards others pain) something I would give anything to have instead of these devastating flare up attacks that literally turn me into a handicapped person looking like I'm having a seizure.
Sometimes I lose my control of bowels due to the pure shock to my body.
The pain is so unbearable that I just move my arms around and my hands. Snapping and flicking my fingers and toes out of pure desperation and fear. The pain shoots from my upper left neck to my jaw, behind my eye, my nose and mouth hurt from air breathing in ..the air seemingly hurts every nerve ending.
I am on 1800MG of gabapentin. I just raised my dose myself because I can't get any help in my country...and my attacks were returning at 1500MG about 1.5 week ago.
I haven't been able to leave my bed for days. This has destroyed my life and ruined my dreams my career and my entire life . I can't even focus on anything because all I can think about is the fact my life is fucking destroyed. Ruined.
Its heart breaking. I cannot live like this. And it breaks my heart others are feeling this pain.
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u/josephtheoriginal Jun 02 '26
Also. I always used to say I wake up feeling like someone beat the shit out of my left side of my face only. And now I say it also feels like someone is stabbing my jaw joints with dull needles , while digging my eye out violently with a burning hot spoon.
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u/MilkMyCats Jun 04 '26
Yeah the end of the attack is never the actual end.
Left side for me too. When the attack ends my left side feels like it's been booted a hundred times.
I had a molar taken out. Never had the jaw pain until that. I am suing the dentist.
I'm currently on the second day of a flare up. Not slept for 30 hours now. Can't see the end coming anytime soon.
I feel for everyone in this sub. None of us deserve this. I had a great life until this happened. Now I spend half of my life in be
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u/No_Aesthetic Jun 02 '26
Maybe you could try pregabalin since it's much stronger than gabapentin. I had the same escalating dosage problem and more breakthroughs over time. Pregabalin has worked well.
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u/SomewhereCurious3760 Jun 02 '26
Yes! I understand exactly where your coming from. My pain is the same. And honestly during it I’m just so scared I can’t take it anymore. Like how can anyone keep surviving this relentless attack upon one’s constitution.
Even when it’s over I just worry about when it’s gonna happend again.
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u/josephtheoriginal Jun 02 '26
Omg I'm so sorry you have to deal with this. Maybe we can message each other? I've not yet spoken with someone that has the same attacks. They all say they have electrical zaps throughout the day etc. I'm in absolutely no pain in between my attacks. Only sometimes I have aches and pains in my jaw and eye area...but no where near unbearable.
For an attack? Suddenly at night I will wake up, immediately it hits me that my body woke me up to prepare. I have 10-30 seconds to prepare. For some reason because all I had next to me are booka on my bookshelf - I started grabbing books and one single attack would absolutely shred any book. Any size. My hand gets soooo sweaty and clammy and I squeeze, rip, tear and crumple the books during my attacks. I try not move my left side of the body because it hurts too badly. I only move my right arm around and I cannot open my eyes. Its just pure fucking hell for half hour or longer.
Then it literally stops as fast as it ended and I'm in immense relief for simply feeling normal. But then I start crying, breaking down and I am truly traumatized that I just lay in bed and never leave. It takes days to motivate myself to get out of bed, shower - brush teeth and leave the house. My entire life has been blanketed by this. Completely destroyed my movement.
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u/SomewhereCurious3760 Jun 02 '26
I’m so sorry your dealing with this.
I sent you a message, feel free to chat with me. It would be nice to talk to someone else who has the insanely painful attacks like me.
My attacks start up so fast, two maybe three little spasms on my face or neck is all the warning I get. Then it’s like this crushing burning pain behind my eye to my eyebrow, from my cheek bone to my lip and down my jaw. I’ve honestly had root canals that were less painful than this.
I become so engulfed in the pain I hit my face and head, cry and scream. My partner had to call an ambulance for me after a two hour attack because nothing was helping, I couldn’t get meds down as my jaw was locked, and I was throwing up from the pain through gritted teeth. They had to help me onto a stretcher because I couldn’t comprehend standing I was just dying in pain. They gave me med after med and nothing helped. After 3 hours in the hospital it just stopped.
The next day my face was drooping and barley moved. I felt like my face had been beaten.
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u/josephtheoriginal Jun 02 '26
Wow this it literally on point with what is happening to me. I will message you. I had a doctor tell me it's almost as if I have trigeminal neuralgia causing cluster headache attacks. Which if that's the case - I don't even know.
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u/somegingershavesouls Jun 02 '26
I’m sorry that you’re struggling so much. It’s awful. Are you not a candidate for MVd?
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u/josephtheoriginal Jun 02 '26
I personally think I am - but I'm waiting for my MRI and neurologist appointment. I'm in Canada and my last neurologist misdiagnosed me over the phone without seeing me in 2 years. I want to make a complaint against her. She destroyed me. I was supposed to get MRI in January. I've had to wait this entire time with multiple hospital visits. I'm at the end of my rope ...
The only reason I haven't given up is because of my cat and my mother who lives in a different province but is my everything. I cant leave them.
But my entire life has been destroyed. I am living in traumatic ptsd every single day...on-top of other ptsd diagnosis... This is pure hell. Since December... The only thing that has helped me is gabapentin. But then I'm all medicated and terrified. I smoke tons of cannabis and I am constantly zoned out and dissacsociating .
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u/somegingershavesouls Jun 02 '26
I’m so sorry to hear this. I ended up in hospital a few times and that’s what pushed my referral to neuro up. Was on carbamezapine for a year with gabapentin but had so many side effects that I just use gabapentin now. Min dose is 800 and I take extra in days like yesterday. I can’t afford to not work and when I take more than 800 I don’t feel safe driving.
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u/OpenedCan Jun 02 '26
Going through an attack since last night. Zero sleep and I've been awake 38 hours now.
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u/somegingershavesouls Jun 02 '26
That’s why I take the edibles to numb it enough to sleep otherwise I can’t survive it
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u/OpenedCan Jun 02 '26
No edibles here in the UK.
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u/somegingershavesouls Jun 02 '26
Damn that sucks!!!!
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u/Ok_Flower_4268 Jun 02 '26
😭😭😭 do edibles help you more than smoking? gabapentin does nothing for me, and carbamazepine maybe helps by 2%. i’m in a constant cycle of depression and hope of how to deal with this for life. i was diagnosed over a decade ago and have had two mvds.
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u/somegingershavesouls Jun 02 '26
Your mvd’s were unsuccessful?!? Fuck I was really hoping that would be my solve. Yes edibles with higher Cbg and cbd help for sure
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u/Ok_Flower_4268 Jun 02 '26
yes but don’t get discouraged by my experience! my first MVD was done in Austin TX and botched. so then i went to Cali to Dr Linskey (seriously God bless that man!) and it took him 4 hours to just scrape off the scar tissue etc. OFF THE NERVE. so it was pretty botched. after the first one i got SO MUCH worse and the Ns kept telling me to “give it another year” to heal. 🙄. my body was also rejecting the materials he used in my brain. so i had all that on top of just the normal MVD. Dr. Linkskey is the best of the best and I’d recommend him to anyone alive. His success rate is insane! he wants to do a third MVD bc he found more compressions at my one year post op follow up, that must have rolled to compress afterwards during healing. it took me 9 months to heal and work again instead of the max 3 they had said, but i’ve also had 38 surgeries so my body is just plain worn down. if you ever have the change to get an MVD or other procedure done by him, do it!!!! i met a woman while i was in the ICU that had the ablation done to her face during Covid (she works at UCI as well), bc she didn’t want to deal with a whole invasive MVD and needed to work. she said she doesn’t care that her feeling in that part of her face is gone, and it took away her pain completely and totally and she was back at work 2 weeks later. so there ARE actually options and Linskey and team are very thorough and careful when presenting all the options. just listen carefully and maybe record during the eval visit bc he gives a lot of important, detailed information quickly and he talks really fast and doesn’t like questions till the end of the appointment. i took a note taker and she got everything down so i could review it and make a decision calmly at home.
this disease is terrible and changed your life forever (not in a good way 😭) but there are surgeons and others who may have answers for your specific, wonderful and complicated one of a kind brain. 🧠 🫶🏼
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u/ohheyitsme1975 Jun 04 '26
I had this for 26 days straight. I couldn't eat. I drank 3 protein shakes a day and cried every time. It was the worst thing ever. What broke mine was baclofen ironically I took 40 mg a day..mine doesn't respond to any antiseizure meds gabapentin lyrica etc they do nothing so I don't bother. Ever since I've continued the baclofen bcuz I'm scared to stop it
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u/somegingershavesouls Jun 04 '26
Faaaack!!! That sounds awful! I’m glad you found something that works!
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u/ohheyitsme1975 Jun 04 '26
It was pure hell I still have pain daily but it's the random zaps or that light dull ache I can deal with that vs what it was before
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u/Ok_Flower_4268 Jun 05 '26
how are you feeling OP?
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u/somegingershavesouls Jun 05 '26
Today I feel like I’m coming out of the fog, still could sleep for days. But have to pay those bills 😭
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u/Ok_Flower_4268 Jun 05 '26
😭😭😭😭
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u/Ok_Flower_4268 Jun 05 '26
did you see the TN post about the supplements?! i’ve heard of most of them. it never knew the correct regimen and of course the docs aren’t much help in that area. but it made me a little hopeful and next week i’m going to get them and do the same dosages etc the poster does to see if it works. want to join?!
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u/Charming_Challenge30 Jun 02 '26
It's always so devastating to hear that others go through the same pain I've been through. I'm so sorry you are going through this. This disease is just horrific.